Further XMRV test results from the UK

I follow the dr sarah myhill regime (off my own back i might add, not a lot of help from any doctors i'm afraid). If you google her you will learn an awlful lot about the various supplements that may be of help to you. i added to the fish oils and NADH which i was already on, cO Q10 (i get it from boots chemist), B vits, D ribose & L CARNITINE. I wasn't sure they made an awlful lot of difference to me until i stopped them, i then went spiralling down and quickly started taking them all again!!

Dr M's place and one of her 'labs' was most uninterested in XMRV, which somewhat dissapointed me to honest as I have a very low ATP from her own test and was keen to see if XMRV depeletes ATP. Dr M appears somewhat single minded as to 'fixing' CFS with one idea and not keen to wander off into any new news on CFS. If patients claim they are better on supplements, then this would be logical for her to ignore XMRV, I guess.

We've seen this disinterest from Dr Teitelbaum, and Dr Marshall. They all have businesses to protect and of course cannot
trash their own theory easily. The other way to look at it, is they aren't wrong at all, and are succesfully treating a different illness from those with XMRV. Which would seem the case.

I've tried her protocol and it never did a thing at all for energy or any other symptom. Then again when did supplements diminish retroviral infections or vanish POTS?! People infected need medications prescribed by doctors at the end of the day, and not vitamins alone. Also I would say that 'CFS' can include maybe 20+ different on-going reasons to be sick, and therefore people who are 'fixed' don't have as many ongoing poor functioning bodily systems.

I'm sure her protocol is helpful for many with CFS, especially those who are defficient in many important nutrients
by poor diet, malabsoption, poor thyroid etc etc.

I think in conclusion I was fishing in the wrong pond with Dr M expecting her to embrace XMRV and expecting her to take an interest in XMRV like Dr Peterson, when infact she's 'only' a GP with an interest in environmental illness and not an immune specialist. This error of mine comes from years of being desperate and asking anyone to help. Many of us are still operating on the medical equivalent of asking a Fireman to fix a blocked drain. So we go for anyone with a sound theory, or sound evidence.

I'm sure over the next few years 'CFS' will become many different conditions and we'll all need different types of doctor and one who is relevent to the personal reason we are sick, rather than the presumed reason, or even theorised reason we are sick - due to having this little badge we all wear.

I'm sticking with the Americans, hopefully they can explain why XMRV depletes ATP and come up with a better idea than taking supplements. I'm thinking it's something to do with RN-aseL. Cort will know that, for sure.

That's all very interesting about Dr s myhill whom i've never met and never had any of her tests done. i'm purely trying to keep functioning to a level when i can still pick my kids up from school etc. As i said i noticed no difference in energy when i started copying her regime, so i thought blow this i'm wasting all this money, i stopped taking them and i really noticed the brain fog come back massively, so i think they've helped me there. Of course it may of been a coincidence, i'm going to try and stop again to see what happens.
i actually believe with myself and 2 out of our 4 children ill, it would make sense if we do test positive for XMRV. I'd be left very confused if we didn't. Of course supplements can't cure a retrovirus, but they may still be of help with some symptoms. i don't think it's right for everyone who tests positive to give the impression to everyone that nothing can help until they find a cure. As we all know different things hav helped different people if only very slightly in a lot of cases it's worth taking it.

Your thoughts about dr M were very interesting. I'm sorry that she doesn't seem to accept XMRV, I still find strange that doctors just stick to there own ideas no matter what! It's also interesting the fact that your Mitochondrial test results were bad and you were positive for XMRV. Can I ask you how bad were your Mitochondrial test results? did they show low production of ATP or bloc age? or both? it will be revealing to see if there is a link between a certain type of results from dr M. test and XMRV positive.
I hope you will find some support in your healing path now that you have more information about the real cause.

I have had much the same experience with Doctor M. My ATP production appears blocked but none of her supplements(), diet ideas or desensitisation() treatments made any difference to me*, and like many doctors, I think she got a bit impatient when my disease refused to comply with her theories. *

If you don't feel the need for privacy please can I ask you to blog rather than PM your ATP results etc as they would be of great interest to me as well.

Alas, I fear I will not be XMRV+ as I don't think I have the coinfection problems many here do - for me fatigue and muscle weakness are by far the dominant features.

Inspired by Kim's work on trying to profile XMRV+ people I have been wondering if we on the forum could do something to try and "subgroup" ourselves- along the lines of Dr Kerr's work but using his key symptom patterns rather than (much more objective but expensive) gene work. As you say CFS is likely to be many conditions and personally I would welcome anything which would narrow the field in terms of discussing treatments and testing.

It may be too difficult, it will be replaced one day by Dr Kerr's work but in the meantime it might help us all to manage our condition, our efforts and our doctors better. I'll post a new thread on this soon and see whether anyone wants to join in.

Meanwhile I wish you a short wait for real help with your real disease and thanks for sharing so much with us here

OTH

*with the exception of injecting B12 which maks a huge difference to my brain fog. I recommend trying this out to anyone - safe,simple and relatively low cost and a high percentage of people responding well.

The post in that thread that says people live on average 25 years less, is that true? If it is it'd put life expectancy at around 55 years.

It's scared me, I don't wanna die middle aged.

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The 2005 Jason study is the ONLY published source of data on deaths with CFS. It has some severe limitations which Jason acknowledges in the paper but it's the best he could do with the data he had. Not knocking Jason here - he has done superb research on CFS.

It's drawn from about SELF-REPORTED data from family/ friends of people who had CFS and had died. (And is from a somewhat controversial American group IMO, the National CFIDS Foundation.) Self-reported data means that there wasn't a way for Jason to confirm if these were actual cases of CFS (however you define it) or if the deaths were actually from the causes reported (i.e. no autopsy, death certificate, etc. to confirm).

The death rate from CFS is actually NOT KNOWN. No one has followed a group of CFS sufferers for years or even decades to look at when they died, how many died, what they died of etc. That is why in another thread here I asked people about long-term CFS effects. I am trying to convince someone to look into this.

I think our main health worry outside the ME and CFS is the effects of inactivity.

We are super couch potatoes. People with MS often develop heart problems because of this.

As a diabetic I can't do the things I would like to help myself.

The other thing that puts us at risk is we can't tell when we are developing another disease. I did not realize my blood sugar was going sky high, I just thought I was finally experiencing the fatigue other people spoke about. My father's first sign of cancer was a severe pain in his shoulder something I have been getting for years.

This is what worries me, I was never really that worried but my heart's racing now.

Should I be taking CoQ10 supliments? I take a multi vitamin everyday and a cod liver oil capsule. What else should I be taking?

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I hope this doesn't sound like psychobabble...but worrying is a pretty big enemy when it comes to cancer, and many diseases. Find a way to calm your mind and you are well on your way. The positive effects of meditation are well studied and documented. I don't have any sources offhand, but look it up on Wiki and there are many good links.

Many medicinal mushrooms are very effective as both preventative and therapeutic re cancer. (Again, for references check out Wiki)

Trametes versicolor (turkey tail)-contains PSK which is widely used in chemotherapy.

Cordyceps

Red Reishi

Shitake

Chaga

The list is long, but again, Wiki up 'medicinal mushrooms' and you will have a good start.
Many of these inhibit tumor growth (as opposed to being cytotoxic), so it's best to take them daily as prevention.

The other way to look at it, is they aren't wrong at all, and are succesfully treating a different illness from those with XMRV. Which would seem the case.

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That is not a valid argument - not meant to criticise you, just to say that so many therapies/supplements what we use for one thing may have therapeutic effects for other things... so where someone thinks they are addressing lyme, or chelating metals or mito dysfunction, they may simultaneously be DIRECTLY addressing xmrv as well. Or only addressing xmrv - you get the point. This is especially the case with broad range supplements, but even things that are designed to treat one specific thing, work on one specific mechanism, can have additional effects.

That's true. Presumably this group could even include relatives? Interesting stuff.

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I checked. There are 2 relatives in there (a husband and a daughter), but both relatives have ME/CFS. In other words all 15 people from the UK cohort who tested in December have ME/CFS. Right now with the test prices as high as they are I doubt there are many "healthy" people willing to pay for a test.

So currently we have an 8/15 positive rate or 53% for the UK, which is identical to the results on this board (although clearly there will be an overlap between the two groups). It seems retroviruses do not respect international borders after all.

And all those results are before the serology test. Remember she said false negatives are a bit of problem right now! And they will go back and double check results sometime in March with the serology test.